Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Saturday, January 3, 2009

Chloe and her baby

Here is a pic of Chloe and her baby. If you look closely there is tape on the baby's face. I did a close-up of the doll - just scroll down. Here's the story behind it. The other night we all went to see Maverick at the hospital. She's always been fascinated by all the tape on him. They were changing the tape on his breathing tube when we were there. The next night Chloe came to me holding her baby with the tape. She said, "My baby sick. She not come home. She need more tape." She handed me the scotch tape and I pulled some more off for her. She taped the baby's arms (Maverick has tape on his arms from his IV and PCL). Last night when I came home from the hospital she asked me to take the tape off the baby. She said, "She all better. She come home from the hos-a-paytal." I just thought that was a cute story. It almost made me cry when she brought the baby to me with the tape on her face - then I told myself to just suck it up. I'm crying too much lately.

As for Maverick, he had a pretty ok day. I'll take that. His dialysis output looks normal now. The cultures are still negative. They started him back on a little dopamine last night. He's responded well to that. He got some blood and platelets today and a dose of bicarb, so he's positive on his I's and O's - which basically means he's very puffy. I'm sure the nephrologist will change his dwell time to hourly tomorrow to try to get some of the extra fluid off him. His WBC's are at 16 - they've been there for the past couple of days and his CRP went from 2 to 3 today. I'm just a little nervous. I'll have to keep a close eye on him. Other than the edema he looks good. His color was good today. He has been a little mottled the past several days, I think it was probably related to his acidosis. They have his blood gases in a pretty normal range now. They are slowly weaning his ventilator. I don't think they'll be able to do much more until the extra fluid comes off, though. I really think he's getting a little more movement in his upper extremities. He still can't do much above his wrists, but I think he's getting a little better. I had a dream last night that I was changing his diaper and he kicked me. That would be great. I'm taking that as a sign of things to come.

On the home front, Greg starts back to work tomorrow. The kids go back to school, so I'll be hanging out at the hospital during the days with Maverick. It's been challenging keeping everything balanced. I feel like I'm holding plates on both hands and on my head and standing on one foot and that foot is on a ball. All my friends, family and church have been helping keep the ball steady. Thanks for your continued thoughts and prayers. Love you all - jc


Anonymous said...

That story about Chloe and the pic just made me want to squeeze her! What a great little "mommy" she is! I prayed for Greg's day back to work and am continuing to pray for Maverick and his care. Let us know how it was for Greg today. We love you all. The Burchfields

Anonymous said...


A small group of us from church would like to come see you Thursday morning. Would that be ok? We would probably arrive around 10. Just let us know.
Love & Prayers,

Anonymous said...

The girls in T & T are keeping Maverick in their prayers. He continues to be on our prayer list every Wednesday night. We all send our love and prayers Mary, Summer, Kim, Mary Anne and the T & T girls.